Dear Parent’s,

I have enjoyed speaking to most of you over the past 7 months and many of you have said how you would like to have informal meetings specific to your child’s CLN diagnosis, so Mimi Petty – Peer befriending Coordinator and I have looked at how we can facilitate this.

We identified 4 core groups – we support high numbers of families affected by CLN2 and CLN3. We also support fewer families affected by other CLN’s such as CLN 1, 5, 6, 7, 8 and 14, within this broad group of other CLN’s we support families who have children under 16, and families who have young adults and adults over 16.  

We have initially planned a group specific meeting every fortnight as in the table below, this enables each group to meet every 8 weeks. We recognise that not all parents will be able to attend due to work and appointment commitments, I can certainly look in the future to both increasing the meetings to monthly for each group as well as holding some at different times depending on your feedback.   

If you would like to attend a meeting, please email Lisa Forsyth admin@bdfa-uk.org.uk and she will send you a link, we will highlight each meeting nearer the time as well.

Kind regards

Sarah Kenrick

Family Support and Advocacy Partner